And It’s Surely To Their Credit

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The West Wing – And It’s Surely To Their Credit

Because of you I am a good nurse. 

My favourite preceptor never introduced me as his student nurse to the surgeons, I was always his sidekick. The first time I played scrub nurse it was for the morning orthopaedic list with the upper limb surgeon. After I carefully scrubbed in his presence, managed to slip on both sets of sterile gloves without ripping them, and didn’t contaminate myself all the way to the operating table, I went to introduce myself to the surgeon. I was terrified that he’d refuse to have a student nurse on her first day in theatre scrub for him. He had every right to feel that way too – I had absolutely no idea what I was doing. My preceptor slid in beside me, freshly gowned himself, before I could even speak .

“This is Dannielle, my sidekick, she’s gonna scrub for you,” he said, and even behind the mask I could tell he was grinning.

“Well, goody,” the surgeon said in his polite British accent. “Skin knife and artery forceps to start please sister.”

“Yes, right away,” I’d said, smiling widely even though he couldn’t see that part of my face.

I spun around and turned to my preceptor in a panic. Which one was the skin knife? I had learnt 10 and 15 blade. What in God’s name were artery forceps? He laughed at my expression and called to the surgeon.

“Ya know Matt normal people say 10 blade and a haemostat, give the poor girl a chance, she doesn’t speak British.”

The surgeon laughed and rolled his eyes, and I handed him the instruments, feeling stupid. My preceptor didn’t allow me to feel stupid for long. He let me scrub for countless procedures, taught me how to be a circulating nurse, and annoyed other scrub nurses until they let me observe their surgeries – a kidney transplant, a liver transplant, an aortic valve repair, and a coronary artery bypass graft (CABG). Having a preceptor who teaches with the same passion with which you want to learn undoubtedly shapes one’s career as a nurse, they help make you into the kind of nurse you want to be.

During training, other nurses overwhelmingly influence what sort of nurse you will become when you graduate. More often than not they guide and teach you, showing you how to be a competent nurse, but one can learn just as much from poor experiences, learning about the kind of nurse you don’t want to be, the behaviour you want to improve and learn from. I carry all of these experiences with me as a graduate nurse, because now I am the nurses that taught me, patients are my responsibility, and I have students of my own to teach from time to time. However nurses are not the only ones who influence us in our path to become RNs, there are many reasons we even come to nursing, and so many people who shape those ideas. For my first year as a qualified registered nurse, I would like to pay respect to those individuals and thank them for the nurse that I have become. 

The Teacher

I am fifteen years old, in year eleven, hell bent on going to medical school. I sometimes wish I had a curtain to hide myself behind, because the voice in my mind makes it hard to see anything good about me, only problems to be fixed. Control is the only drug I need, and it’s an addictive one, one that leads me to the bathroom lunch time early in September. I have chemistry in fourth period, but my mind is thinking of other things. The ritual is terribly familiar by now. I choose the farthest cubicle, checking to see that there is no one around, and attend to the cutthroat business that is making myself sick. Then I go about the other business – hiding it. I rinse my mouth with mouthwash to kill the smell and get the acid off my teeth. I place a cotton pad soaked in icy water around my eyes to stop the redness and stinging, so I do not draw suspicion by looking like I’ve been crying. I smooth my clothes and follow the command from my mind to act normal. I make it to chemistry class, my facade holding, I make it all the way through class too, even though I feel a panic attack coming on, because a familiar feeling is beginning in my lower abdomen. Pain. When the bell for end of class rings I walk along one of the upper levels of classrooms, away from the rush of people who might notice that my mask is cracking, because my heart is racing, my stomach churning – from anxiety or as a side effect from vomiting it is unclear, but it hardly matters. I see my biology teacher, my heart races faster – I am bad at maintaining this face around him, he sees right through it so often, he is too nice and I feel guilty for lying. But this is a secret that burns everyone who touches it, so I always try. Today something is different though, I don’t know what, perhaps I have managed to wrestle back control from “her”, if only for a moment, because when I smile and wave at him, strolling past quickly, he turns back. When he asks me if I am okay, I say no – against better judgement, against her screaming voice, even though I know it may mean the end of my secret. 

I learnt the first thing about being a good nurse before the thought of becoming one even occurred to me. From my high school biology teacher I learnt what it meant to do more than the confines of your job description, because when you care for other people duty calls you someplace higher. To have the privilege to care for, teach, or mentor others as part of your job is to understand that people are more than the task in front of you, they are more than a policy, and more than what you can ever be taught in university. When I told my teacher that I didn’t just spend my lunch times not eating, I spent them throwing up too, I expected him to panic. I figured it wasn’t part of teaching curriculum to know how to deal with teenage bulimics, you just passed them on to people whose job it was to fix them. I expected that maybe he would say that he was sorry, but he had to drag me kicking and screaming to our school’s guidance counsellor – who I was not a fan of. I even expected that maybe he would be sad, and ask me why, why did I do this? How could I like throwing up, perhaps he would ask – like the school’s deputy principal would ask two months later when he found out. He didn’t do any of those things, there was no panic, there was no passing me on, no dragging, For many weeks and months after that day he listened to me, helped me figure out what I wanted to do, and let me realise on my own that I wanted to stop, and was there for me when the time eventually came to tell my parents, he even called my mother when I was too nervous to go home and face her. During this time he never let me forget that I was enough – smart enough, good enough, capable enough, and soon I started to believe it too. He wasn’t obligated to do any of this in his role as my teacher, but he did anyway, because it was what I needed. He realised that what I told him was the hardest thing I have ever told anyone, and respected the kind of honour associated with that. I trusted him enough to tell him my darkest secret, and he never let me down.

My teacher taught me what it meant to be empathetic, and not just do a job, but be genuinely passionate about what you do – enough to go the extra mile without missing a beat. When I admit a patient for surgery, or care for someone on a ward, or attend to an emergency patient, I have a list of requirements that I must fulfil. I must abide by policy, professional frameworks, refer to my knowledge and assessment skills. If by the end of a shift my patient has had their prescribed interventions, I have helped them with activities of daily living, prevented harm, and reported deterioration to doctors – my job is done, legally and professionally. I am busy in a shift, and sometimes there is not time to hold hands or give reassurance – but I do it anyway. My patients are more than a list of tasks to complete, and my job is not just to carry out such a list. I make time to listen to these conversations, because it’s an honour to be chosen to hear them. If a patient trusts me enough to tell me they are scared, I must give them the respect of my attention and my comfort. This comfort isn’t an extra, it is part of being a nurse, and why I became one.

Thank you for teaching me the power of empathy to help and empower another person, because of you I am a good nurse.

The Doctors 

Frank

To become a nurse, or any health professional, is to learn a new language – a plethora of jargon and acronyms that become part of your everyday vocabulary. You don’t go to the toilet – pt PUIT. No more do you eat three meals a day, one “tolerates diet and fluid”. To enter an environment where people freely use this language is akin to travelling to a foreign country. This is how a patient feels when they enter a hospital. As well as this new language, one learns a new set of social rules and skills. In real life, we learn our social skills through experience and develop schemas, we observe and put into practice that which we have observed. In nursing world, we have to learn this all over again with interesting new observations. No one ever taught me the appropriate conversation to have with a patient when they’re half naked, or when you’re violating their personal space, or how to ease the awkward silence that exists as you stare at someone’s chest to count their respiration rate. However there is a doctor that stands out who taught me that all of these things can be done, and done well, and his name is Frank.

Frank and I met in my first semester of nursing school and three months after my laparoscopy. I was sent for a scan as a follow up after surgery and to ensure my IUD hadn’t attempted any sort of breakout from my uterus, because perforation of any organ is absolutely no one’s friend. Those endo sisters among you will know said scan as the delightful process where one lies with an ultrasound between one’s legs for twenty or so minutes and tries to focus on something other than the fact that this is the least fun you can have without your skirt on, ever. Frank was uniquely gifted at conversations you can have without pants on. Within five minutes we had covered our shared university alma mater, how he thought nurses were the greatest thing to happen to the world, and several jokes about the absurdity of a former premier’s head. I laughed, I felt comfortable, and yet I still wanted to throw up, and my endometriosis flared up which made things fifty shades of shit. He managed to seamlessly swing from laughter and manner that could only be described as ‘jolly’, to quietly asking me if I was alright and reassuring me that everything would be okay. I am one of those people who cries stupidly when people are nice to me, so naturally I went right on cue. This doctor did not make me feel stupid for feeling this way, he didn’t tell me not to cry or that there was nothing to worry about – because clearly for me there was. He just patiently waited while I let the anxiety out, offering a helpful hand on a shoulder, or sympathetic nod. Then when I was ready he went right back to his jokes.

Sometimes the only way is through. In nursing I cannot dance around the fact that something will be awkward, or that it will hurt, but if I act like I am asking them if they’ve seen any good movies lately, rather than whatever organ system I am focused on at the moment, things go alright. Patients can read you like a book, make no mistake. If you act like what you’re doing is a big deal, or makes you nervous, they will mirror those feelings. Frank taught me the importance of treating the awkward as routine, while still acknowledging the foreign environment the patient finds themselves in. You must be as prepared to make small talk as you are to hold hands, and treat both as a completely normal part of the process. I am still not as adept at these situations as Frank, but I have a standard to aspire to.

Graham 

The first time I left Graham’s office, I cried for a long time; it wasn’t because I was sad, not really, despite much talk of surgery and endometriosis. The only thing I was sad for was the knowledge that before this I had accepted less than being taken at my word. I cried with an unusual mix of relief and something unidentifiable, because I had never felt so understood in all my life. I’ve written plenty in the past about how I have been so fortunate to have a great specialist, but it cannot be understated how greatly this treatment has impacted on how I treat my own patients. It’s not only how his kindness, patience, and consideration made me feel better, it’s how it empowered me to trust myself and become my own advocate – because not every medical professional will understand or even try to understand endometriosis, sometimes you have to be the one to push.

No matter how many times I find myself sitting in the same spot in his office, usually three months too late, to tell him that things have not been so good, he acts like it’s the first time I’ve even bothered to ask. There may be some theatrical sighing and a head shake as he tells me that for a nurse I am a terrible patient, but every word I say is taken seriously. If it matters to me, it matters to him. If there is a story that goes with it, he listens. It’s not so hard to figure out what patients want on a basic level, they want to be heard, to feel like what they say matters, that the person they are telling cares. A few times during an appointment he has answered a call from one of his children or another patient, always apologetically. Some people shake their heads when I tell them this, saying that he could have waited for me to leave, but I see it in a different light. The people who call know he is a doctor, and a busy one, so for someone to call and expect to be answered, it must be important. I know from my own experiences that knowing someone needs you and not knowing why can be twice as distracting as just simply answering and figuring out what you can do later, and reassuring that person that they are heard. To me that shows genuine care, and if he treats his family, and his other patients with this respect, then surely I too am in good hands. In nursing it is so often that our care goes unnoticed because it is out of sight – the phone call to a doctor at 2am to demand they come and review a deteriorating patient, the care I take to have a medication checked before administering it – but  I am okay with that, because I do not care to be acknowledged, I do it for the patient.

I find myself each day on the ward using some classic “Grahamisms” – a joke he’s made to make me feel better, emulating a reassuring expression, or simply trying to think what he would say if this were me, or one of his patients.  All of them have helped me with my own patients. More holistically, his attitude of listening to the patient narrative and allowing it to be one of the major tools for assessment is something that influences my practice. It is the reason I listen with interest as someone tells me the story about their grandchildren, because sometimes it’s important, and give a clue to something we may have missed – depression, decline in mobility, cognitive problems. Patient stories matter, and part of providing true patient centred care is seeing the patient in their world, rather than the artificial and controlled world we create in hospital. Graham taught me that health professionals can make differences in people’s lives, big ones, and though our names might be forgotten, and our faces may fade away in their minds – patients will never forget the care we provided or the safe and reassuring place we created for them.

Thank you for teaching me the real life meaning of patient-centred care, and how empowering it is as a patient to be heard, and understood. Because of you both I am a good nurse.

The Matriarch 

My Nanna was 77 years old when she died, which seems far too young in an age where life expectancy for women is over 80. The disease was metastatic breast cancer, the cause liver failure, the complication urosepsis. Nanna always wanted to be a nurse, she once told me, a theatre nurse, just like me, so that she could watch surgery all day. Nanna never turned away from blood and gore, she loved it, even when she claimed she didn’t. I was in my first year of nursing school when she received treatment for a relapse of her primary cancer, and was taking my final exams the week she passed away. The day she found out that she wasn’t going to make it, and that mere days remained, she was braver than I thought possible. She held things together after an initial outpour of emotion, she began charging me with the responsibility of making sure each granddaughter would have something of hers, and what of granddad’s would be left to her grandson. She and I attempted on that first afternoon to cram what should have been another twenty or so years of love and life into a short space of time, knowing that each word came from a stolen moment and borrowed time.

On the third day the ward’s nurse unit manager came and told me that she heard Nanna wanted to see her dog one last time, and told us that if we could sneak her in, she would let us. Nanna was already on a NIKI pump, filled with medications to ease pain and keep her sedated enough not to feel any distress, but when Chloe came to sit on her bed, I swear I saw her smile one last time. The nurses sat at the door, trying to catch a glimpse of this sweet moment and smiling. This was a simple gesture, but it no doubt meant everything to Nanna to see Chloe one last time. She saw her three sons, two of her granddaughters, her best friend and her dog – she could go now. She didn’t wake up again after that day and died two days later. The nurses in oncology talked to her as though she were still answering, they did turns and care as though preventing pressure areas at this point really mattered, because my Nanna, no matter how close to the end, was still a person who deserved comfort and care. Those nurses were exactly what I wanted to be, but it was Nanna who taught me what it was like to be the one dying. She taught me that there is no textbook way that things go when you hear that the end is coming, and that it is possible to be brave even when inside you are not. Nanna lived a life for others, and that was how her life ended too – she was strong for us, even when it was us who wanted to be strong for her. At her funeral my father described her with a line from Bruce Springsteen – courage you can’t understand. That has been true for so many patients I have cared for. I look at them and wonder how they don’t just cry all the time, how they manage to make jokes and compliment my hair or my colleague’s tie. They find something, some place inside them, and keep going despite their circumstances. My patients have been the best teachers of all. They help me understand what it is like to be vulnerable or scared, or confused, and that these emotions matter. They are more than their disease. I have been the patient myself, and for so long I didn’t think much of myself, and for that reason I accepted it when people dismissed my pain or didn’t take me seriously. Once I found a doctor who helped me realise that I matter, I knew I never wanted any patient to feel the same way. My patients are the reason for my job, and they teach me something new every day. I see Nanna in them each day, and for her, and them, I do my very best.

Thank you for teaching me what it is to be a patient, how we as humans can handle even death with grace and dignity, and that loss changes families forever; and how I help families deal with that can also change them forever. Because of you, I am a good nurse.

On my final day of theatre placement I scrubbed for the same surgeon as on the first day. Before he even turned to ask me I handed him a yellow sharps tray and held in my other hand a haemostat.

“Skin knife and artery forceps,” I said.

“Thank you sister,” he replied.

“You know I’m not a nurse right? You don’t have to call me sister, I’m a student,” I told him.

“I think I’ll call you sister,” he said. “You’ve earned it.”

My preceptor stood to the side, supervising but letting me do the case alone; I could see his eyes smiling behind his mask.

“Thank you,” I whispered.

To every preceptor, every patient, every doctor, and friend…to every family member, every other student nurse who made it through with me: thank you for making me more than just a good nurse, but a great nurse, a nurse in progress who humbly presents herself each shift to patients and other colleagues to ask – what can I learn today?

To every nurse and midwife reading, Happy International Nurses Day sisters!

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Better Than Anaesthetic

The Realities of Being A Nurse With Endometriosis

Drain the pressure from the swelling
The sensation’s overwhelming
Give me a long kiss goodnight and everything will be alright
Tell me that I won’t feel a thing
So give me Novacaine. 

Give Me Novacaine, Green Day.

The pain has been ebbing and building for two hours when it changes to constant, and stabbing. The feeling of nausea is subtle, but it too grows, as does a hazy feeling inside my head that is the precursor to dizziness. I am sitting at a table, where it’s easy enough to hide these things, and I occupy myself with the lists and tickets in front of me, I smile at people as they walk in – no one knows except the person beside me, because I have attached a blister sheet of paracetamol to my clipboard. We all laughed at first, about how nothing would stop me being at this event, not pain, not anything, and so I have meds on hand, naturally. When the first wave of intense nausea comes my hand rushes to my mouth. My colleague tenses and hands me a bin, but I have no desire to vomit in a bin in front of everyone, especially as I see my doctor seated in the back row in front of me – I pray he doesn’t turn around and see me. When I return from the bathroom I sit on the floor at the back, feeling as though I may pass out. I recognise a pre-syncopal episode when I see one, and now I am feeling it. As I sit I look at the back of my doctor’s head, willing it to stay turned away from me. I can feel the eyes of my friends on me, worried, wondering what they should do. I sit filled with guilt that they are worrying about me, instead diverting their full attention to enjoying the fruits of their labour. Don’t look back, I think to myself, watching his head; don’t look back and see me.

I can already hear your question, reader, why didn’t I want him to see? What luck, I hear you say, to be feeling horribly sick with an endometriosis flare up and be sitting in an event surrounded by nothing but other women with endo and your doctor. The thing is, the very last thing I ever want is to show other people how sick I am. I wonder if it’s because I want to hide it, because I don’t want pity, or if it’s denial. If no one notices, it can’t be that bad, right? It’s learned behaviour from my days as a teenage bulimic – showing symptoms was synonymous with showing my secret and I avoided it as much as possible.

Perhaps it’s because my job involves caring for other people, and when taking care of others we instinctively hide our own distractions so that this person knows we are focused on their needs. This relationship won’t work nearly as well if the other person thinks they need to take care of us. I can still remember a shift as a student nurse where I had no choice but to go home sick because I couldn’t push aside how ill I felt anymore, I had pushed too far and nearly blacked out in the middle of a blood sugar check. The patient in question looked up at me and asked “You right nurse?”. I nodded and smiled, telling him that he needn’t worry about me, I was making sure he was okay. I finished – just. As soon as I wrote down that value I walked quickly to the bathroom where I felt my legs give way and I sat on the floor until things became clearer. Even then I knew that I couldn’t let my patients see my pain, ever, because I was not in the business of patients worrying about me when it’s my job to take care of them.

Nurses make the worst patients, don’t they?

When I started nursing school I saw patients with the same problem, the kind that told me they were fine and wanted to go home, and then nearly passed out walking to the shower. Patients who didn’t want to bother me by asking for pain medication and only relented when they were wracked with pain and I held their hand as my colleagues administered strong pain medicines. If I hadn’t already appreciated the danger of denying symptoms before then, nursing school certainly reiterated it. But it didn’t seem to be enough, I still reverted to my standard defence mechanism. Final semester of nursing school, September, my pain which had been well controlled for close to eighteen months, began to act much like an unruly child. Since my surgery and IUD insertion, and a few months of hellish pain, my overall pain was reduced 90% of the time. Once or twice a month I may have gotten pain bad enough to effect my functioning, and a few times a month some pain in response to stress or too much sugar when my best friends and I tried a spree of new dessert places. It was more than manageable. I was doing so well that I joined QENDO as a support worker, flew through my accelerated nursing course, and dreamed lots of dreams that seemed out of reach before – I hadn’t thought I could stand for hours in an operating theatre as a scrub nurse in pain, but now the pain was gone. I fell crazy in love with theatre nursing, and thought the feeling of joy would never go away.

In my final placement everything went completely and categorically to shit. The pain was back most days each week, some mild, some moderate, and some straight from the fiery depths of hell. Those days, combined with the stress of a placement that made me more anxious each shift, made lunch breaks no longer for lunch, but for finding a bathroom to cry or have a panic attack in where no one would see. I hadn’t experienced pain so horrific since before I was diagnosed. I blamed it on my placement – anxiety is fuel for a flare sometimes, surely it’s because of that, I thought. Placement was over, and still the pain stayed. I blamed it on job hunting – that was stressful too. By February I had secured a graduate job for March, my first real nursing job, and yet the pain did not go away until there I was sitting on the floor of a lecture room at UQ trying not to pass out. There was nothing left to blame – I loved my new job, my new role in QENDO, I finally had my own place. There was one question now – what the hell was happening to me?

The task of tackling nursing and endometriosis is a challenging one. At times I feel like I know too much because of my nursing background, and only sometimes is it an asset instead of a liability. It is great to know exactly what doctors are saying to me, or to be able to advocate for myself because I do it all the time for patients, but sometimes I don’t want to know – knowledge can be both a blessing and a curse. The greater issue is one I get asked about a lot – how can you work in so much pain?

The truth is that nursing is the best thing that ever happened to me for coping with pain. When I am in my uniform, or my scrubs, on a ward or in an OR, I am someone different. My endometriosis doesn’t exist for eight hours. I feel it tug and pull, like a child on its mother’s skirt, but I do not look down. By some feat of strength I can push the pain into the background, as long as I keep moving and keep working – and a shift at my hospital leaves little time to be idle. My work is what helps me survive. Being a nurse makes me feel in control because when something happens I can intervene. Pain? Have some PRNs. Nauseas? Have some antiemetics. Strange, new symptoms? Let me page the resident for you and reassure you that everything will be okay. When I feel any of these things myself, I feel powerless, sometimes there is nothing I can do. The pain of endometriosis is such that often no painkillers touch it, you feel violently nauseous, pale and dizzy, and the weight of it crushes you. The feeling of stasis makes me uncomfortable, anxious even, and so when my endometriosis flares up I feel out of control, it slips through my fingers. If I didn’t have my work, I’m afraid of what I would do to get that control back. Nursing is better than any pain killer, better than anaesthesia – for just eight hours.

And there in lies the problem, it’s temporary. As soon as I get home and there are no more buzzers to answer, or IVs to change, or people to take care of I have to take care of myself – and I am really bad at it. If I treated patients the way I do myself, if I ignored their symptoms, denied them pain killers, or just let them feel sick, I would be a terrible nurse. So why do I do it to myself? From talking to a lot of other endo sisters, I know I am not alone in this problem. Part of me wonders if it’s because we have been doubted, pushed aside or dismissed for so long that we cannot indulge ourselves, because we feel guilt about being selfish, or worried that people will think we’re “sick again” and tire of us. If we pretend everything is fine and act normal, no one can hurt us with a lack of understanding. Perhaps it is a strong desire to just be normal, after being sick for so long. There is an element of denial. I recognise that in myself – I didn’t want to believe that the pain was “back”, it was just a little flare up, something I did, something I needed to fix. If the pain wasn’t back then no one needed to know, and I could keep pretending.

As carers we need to remember to engage in self care. We must refute the notion once and for all that self care is selfish, or indulgent, or some kind of privilege we must earn. It is none of these things, it is a necessity. How can we as nurses, or health professionals, or counsellors, or parents expect to care for our charges if we have not taken the time to care for ourselves? It isn’t easy, as part of our role we are often conditioned to put others before ourselves, and that attitude doesn’t leave us at the door as we leave work. It can be an ongoing challenge to change this attitude, to learn to say no and take a minute to ourselves, to stop denying. I have no easy answers for you on how to achieve this, it is my own project at the moment, I am learning these things for myself. It has been helpful to ask myself – if I were my patient, would I accept this treatment?

I encourage you to create your own self care toolbox, whether you’re a nurse, you have endo, or you’re a special hybrid nurse-endo sister like me. For endometriosis, every professional I have had the pleasure of talking to has recommended creating such a tool box. Who are your people? What can you do for pain relief, both pharmacological and non-pharmacological? What are your coping strategies? Who are your endo team, the health professionals you can access to manage pain and stress? Most importantly, be kind to yourself – if you live with endo and you generally exist and function, even just a little, you are doing so incredibly well. It is not an easy burden to bear, but I have seen so many of us bear it with grace and optimism.

And so it is with my own advice in hand I once again embark on the task of controlling my pain; I venture into the medical world not as RN, but as patient, to once more find a new GP, despite it being my least favourite task, because pain is no one’s friend. I lived in pain before my diagnosis for so long, so I owe it to myself not to live that way again. I owe it to myself not to pretend that there is nothing wrong, no matter how easy it is to slip back into that habit.

It’s okay for him to turn around now.

Code of Silence

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There’s a code of silence that we don’t dare speak
There’s a wall between and the river’s deep
We keep pretending that there’s nothing wrong
But there’s a code of silence and it can’t go on

Is the truth so elusive, so elusive you see
That it ain’t enough baby
To bridge the distance between you and me
There’s a list of grievances 100 miles long
There’s a code of silence and it can’t go on

Bruce Springsteen, “Code of Silence” 

Nursing demands of one a different set of social rules, a set which can only be learned through, sometimes regrettably awkward, experience. As nurses we cross lines, break down walls, and defy boundaries in the name of health and healing. We must shun revulsion, embrace the happy face, and put aside our own problems in service to our patients. There is a talent to being able to make small talk while putting in a catheter or making someone feel comforted, and not weirded out, while showering them. There is just as much talent in smiling at an elderly patient when they turn the shower head on you, soaking you from head to toe, instead of crying “Mildred, we talked about this, if you can’t handle to hose, hand it back”. When I don my uniform I wear many faces, use many different voices, and pretend that body fluids do not smell. I am nurse, sister, hey you, whatever I need to be; I shake away my identity and take on a new one where for eight hours my problems don’t exist. I have such a talent for these skills because I have had years of practice, thanks to endometriosis.

It was a Monday morning in my second term of year eleven, the season had finally changed and the air had lost its suffocating humidity; I loved this time of year. I was fifteen years old. I have delivered newspapers to the office building, picked up a draft of my English paper from the humanities staff room, and checked the time to see how long I have before form class. It was during this mundane moment I was overcome by a pain that I had never felt before. It was like my uterus was turning itself inside out, slowly but surely, while simultaneously someone was stabbing me with a superheated knife throughout my abdomen. It was jarring, and it knocked the breath from me. I’d been having cramps for a few days, and they weren’t exactly subtle, but this was a new feeling and it took me by surprise. Walking suddenly felt impossible, but I couldn’t just plonk myself in the corridor where anyone would see. I looked at my watch again, form class was in twenty minutes or so, I could sit outside the classroom and not be bothered.  I took a dose of ibuprofen out of my bag and swallowed it hastily, praying it would bring some kind of relief. I made it to the classroom, the pain overwhelming, and I sat with my knees tucked under my chin. At this point I was used to pain, I had started getting cramps around fourteen and they hurt, but I didn’t think much of them. I reasoned that everyone had period pain and so I didn’t worry. But in all of my self scrutiny, I suddenly began to look at everyone else and wonder if other girls in my class even got their period. They didn’t look like they had pain, or if they did it wasn’t bad, all of them seemed so perfectly fine all of the time. Surely not everyone was pretending? I started to wonder, on occasion, what my problem was. It was telling that the first thing that came to mind was that my problem was not being able to handle the pain, not the aetiology of it. I decided that it had to be me, and I had to hide it. The message that subliminally floated around was that, as women, we weren’t really supposed to talk about these things outside of hushed circles, and that was where I surely had to keep this.  

The ibuprofen was having zero effect, in fact I was sure the pain was getting worse. I wasn’t sure what else I could do, I had taken painkillers and sat down, yet the feeling remained. I tried not to panic, taking deep breaths. My form teacher, also my biology teacher, was now making his way up the stairs to the classroom, early, unanticipated. When he saw me he was understandably concerned, because I imagine I looked awful, and I was mortified. This was the worse case scenario here, a teacher, a male teacher, asking questions that would quickly take them in the direction of my period. He was unfazed though. I asked him how long ibuprofen took to work, and cursed under my breath when his answer wasn’t what I was hoping for. His concern only heightened, and even though a small part of me wanted to break down and beg for answers, ask why this was happening to me, because he was nice and I was confident he’d say something reassuring; even in spite of this I felt myself straighten, erase the pained expression from my face and reassure him that I was fine. I did not escape the concerned gaze of my teacher for time, and with good reason, and as a result I began to wear a mask of sorts, one that hid what I was really feeling. I stopped talking about it to anyone, I never mentioned my pain. At times this was made easy by the remission of symptoms between each month, in this time I would forget how bad the pain was and assure myself that there was nothing wrong. When it came back the next month, I would scream on the inside and smile on the outside. My teacher knew all about endometriosis, before I did, and he encouraged me for many months to tell someone. He had proven to me already his genuine kindness and care, offering reassurances the few times he found me in so much pain I didn’t dare move,  He never lost his patience when, curled on the floor of the stairwell, I protested that I was fine and he needn’t call anyone to help, and I told him there was nothing wrong with me. He became my friend once high school was over, and he was the first person I called when I saw a specialist for the first time. 

Pain can be suffocating, both physically and emotionally, and at fifteen I was nowhere near equipped to deal with it, and yet I did because I thought there was no other choice. I pretended that there was nothing wrong for five years before I was diagnosed, and talked to only a few people about my pain, maintaining its benignity beyond a reasonable doubt. I recall at twenty years old the anaesthetist asked me about what medications I took before surgery, and he was visibly confounded when I said none. He asked me after the procedure how I had managed it considering the outcome. I shrugged. I hadn’t realised I had a choice. 

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The above collection of photos are examples of a number of times where I have been in significant amounts of pain, but said nothing about it to anyone. I wager that when one looks at these, they wouldn’t pick that later that day I would be lying in bed clutching my stomach, or sitting in a bathroom crying where no one could see me, or on one occasion passed out on the floor of my high school physics lab. Endometriosis cuts into moments of your life that you want to enjoy, it is with you in the best and worst moments of your life whether you like it or not. I graduated from university the first time two weeks after surgery, filled up to my eyes with painkillers, worried I’d fall flat on my face as I walked across stage. My first day of my perioperative placement, I made it to four o’clock before I had to sit on the floor of the locker room because I was in so much pain I felt dizzy. After my best friend’s 21st birthday party I lay on a mattress on her floor, my other friends asleep beside me, trying not to scream and trying to strike a bargain with God, thinking of all the things I’d give up just to be able to sleep pain free. Naturally, many of you may ask why I didn’t say anything about my pain, if it was so bad. It’s a fair question.

There is a code of silence, and there has been one for some time, among those of us with endometriosis and severe period pain. We frequently stay quiet about our pain, for any number of reasons. Perhaps because we’ve been raised in a world that tells us periods are something we don’t talk about outside of closed rooms in quiet tones. Perhaps because there was a time where we shared our pain – with a friend, a parent, or a doctor – and one or more of them told us it was normal, or worse, that it was all in our heads. It may be that we have been in pain for so long, that it becomes normal to us, that pain is just a background noise in the song of everyday life. We become afraid to share, sure that we are alone, despite the fact that 1 in 10 women suffers with endometriosis.

Even once we receive our diagnosis, women with endometriosis often face barriers in a number of areas. Just because we have a diagnosis does not guarantee that others will understand it, including medical professionals. Many women face ongoing battles with their general practitioners, with emergency room or hospital staff, and even with specialists. As we bring endometriosis into the spotlight through global awareness campaigns, women with this disease become better equipped to understand the range of treatments available to them and what they can do to manage pain, preserve fertility, and improve mental health. I recently attended ‘An Hour of Endo With QENDO’ with my colleagues from Endometriosis Queensland, and it was enlightening to see the number of women who left better equipped than when they arrived. We are resilient and strong, and we are tired of pretending that there is nothing wrong, pretending that we are fine, pretending that it’s okay that people think our disease is unimportant.

As endometriosis is thrust into public consciousness through tireless and brave campaigning by people affected by the disease, mythology is shattered and more people begin to understand the reality of living with pain for years on end. As more knowledge makes its way into the mainstream, critical thinking and discussion can occur to ensure that women are equipped with facts, and that we do not slip into the stasis of accepting rhetoric that is untrue because “that’s the way it’s always been”. There has been silence on this front for too long, silence from those of us that suffer, silence from politicians with a platform to encourage funding and public knowledge.

The tide has begun to turn, with the Australian government just last week announcing $2.5 million dollars towards researching better diagnosis and treatment of endometriosis, the result of work by the Australian Coalition for Endometriosis -a group made up of associations like QENDO, EndoActive, and Endometriosis Australia among others. Women are finding their voice and becoming their own advocates in light of education and support from these groups, both of which empower them to value and own their stories and convince medical professionals, family, and friends to take their condition seriously. There is still much work to do to break the code of silence that exists, which highlights the importance of Endometriosis Awareness Month happening now. Women across the globe are sharing their stories through hashtags like #theendophotochallenge2018 and #1in10, and we have a duty to sit up and listen to what they have to say. The wall between sufferers and non-sufferers must be broken down and knowledge of endometriosis must become as ubiquitous as our knowledge of diseases like breast cancer, diabetes and asthma – because they effect people on the same scale. Women’s health is more important than it’s given credit for. Endometriosis does not only effect the person, but the society around them. Pain influences partners, friends, and family; pain is responsible for loss of productivity in workplaces and has an economic impact on the wider state and country. Understanding the systemic effects of this disease is important moving forward.

It’s not just bad period pain, but so much more. We must walk with eyes open, our lips must not remain sealed, and we must above all commit to listening – to women, to their partners, and to medical professionals who have committed their practice to providing evidence based, patient centred care to endometriosis sufferers.

As I walk through the wards each day, caring for my patients, my nurse face on, I smile and my problems melt away. But when I go home, I must learn to admit when my pain is too much, to demand better for myself. I must learn to show my true face and speak up, not only for myself, but for the millions of other women around the globe who share the same fear of ostracism, of pain, of being told they are crazy. We don’t have to be afraid. If you want to go fast, go alone, if you want to go far, go together.

There is a code of silence, and it can’t go on.

The Crackpots and These Women

An Ode to Women with Endometriosis in Their Quest for the Holy Grail of Specialists.  

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I am eighteen years old when I step into the small waiting room of my specialist for the first time at the private hospital on the hill near the river. I admire the comfortable tub chair that I am seated in, much more inviting than the too-soft couch at my GP’s office that often threatens to make me look like an invalid falls risk as I stand to see the doctor. Eighteen year old me is much difference to me now. Her major is still English Literature, not nursing. Her firm belief is that her Masters degree will be in teaching. She is still worried about the physiology class she is missing to be at the appointment. Most differently, she doesn’t think that her pain is anything to worry about and her greatest fear is wasting the time of this doctor and that he will tell her to go home and try yoga or ibuprofen. Little does she know that by the time thirty minutes is up she will have a name for what she has been experiencing since fifteen and a surgical consent form to go and find it. 

I can still remember everything about my first specialist appointment, what time of day it was, what I was wearing, and the class I had skipped to be there. In the grand scheme of things missing one lecture on cardiac muscle turned out to be harmless, especially after going to nursing school and knowing everything I could possibly want to know on the subject. The green blouse I was wearing has since been worn to death, like every item I clothing that I believe makes me look thinner. But I have since memorised every detail of that waiting room because I have been back there so many times. The man himself is a kindly, older gynaecologist with a speciality in endometriosis who is well known for being “one of the best”. I came to him by accident. My GP gave me the referral after she wasn’t satisfied that I had control over my cramps, an issue I’d raised in passing, more of a curiosity than a complaint, at the age of sixteen. I barely bothered her about the pain because I was convinced, with no evidence mind you, of its benign nature and that, like so many other women, it was mine to bear. However when she realised that I’d told her about it first when I was in year twelve and was now in second year university, she was firm in her recommendation that I have a specialist referral. “I know a guy”. Doctors always sound to me like Al Capone when they say this – like their referral list is actually a little black book of “professionals” who will “take care of things”. Whatever, I accepted her guy. I didn’t even realise how lucky I was to have been referred to an endometriosis specialist, a rare bird, who knew his stuff and would have the surgical expertise to diagnose and treat endometriosis when he found it. I didn’t know what I didn’t know. But I was comforted at eighteen by this considerate doctor, who listened to my story and helped me make sense of it, made me realise that behind the reassurances of my mind was a mild yet ever present panic that it wasn’t okay to sometimes wonder if your period would require a trip to emergency (even if every time I came close I talked myself out of it – “it’s fine” she says, even though moving or breathing too hard is really out of the question). This same guy took my hand through surgery, and delivered me my diagnosis on the other side. He reassured me when my pain persisted and sent me for scans so that I could see the proof. When he thought I needed more help with pain he gave me a referral. Her guy did good.

I am twenty years old when I sit in another waiting room at the private hospital on a completely different hill. I have the day off classes because in nursing school you can’t just skip them anymore – all are compulsory. I spend an hour with a knowledgable woman who explains the science of pain to me and gives me medication to help. This is on top of the three new medications I have received from my specialist – I’ve started writing them down to make sure each doctor I see knows the score. I have my diagnosis, I have my treatment – but I’ve never been in more pain. I just want to know why. But going back and asking all the time is an expensive undertaking. I am exhausted, and I wish it wasn’t so hard. I am comforted by my new colleagues who are understanding when I tell them that I have endometriosis, because inevitably it couldn’t be hidden forever. Twenty year old me doesn’t know it yet, but she’ll get through this and her pain will be the best controlled it’s ever been – but it happens by accident, a combination of forgetfulness, reading the nurses’ drug guide, and becoming her own advocate. 

The conversation I have most with other women with endometriosis is about the doctors and professionals we see, because everyone’s got a recommendation and a warning after so long fighting. My list is short and not filled with any horror stories, I love my guy and am just glad I haven’t had cause to bother him for more than twelve months. But others have war stories. Tales of GPs who never listen, of doctors who use “like giving birth” as context for a pain scale (um, rude), and specialists who are brilliant surgeons but don’t know much about what to do with you afterwards. There are also successes. The discovery of a specialist who just “gets you”. Finding a multidisciplinary practitioner like a physiotherapist who has a vast knowledge and experience with endo and wants to work with you to help with long term pain relief. But more often than not these wins are littered with stories of women who had to push on when they wanted to give up, of treatment that makes you cringe at best, cry at worst. Getting a primary health physician to take one seriously is half the battle, but often it doesn’t stop there. Patterns of referral suggest that most women who present to general practitioners with endometriosis symptoms, even multiple time, are not referred to gynaecologists. Management of endometriosis cannot be left to just any gynaecologist, otherwise they are liable to miss things or lack the requisite knowledge to provide women with the best outcomes. But even endometriosis specialists aren’t perfect. There is a great challenge in being a specialist physician, as evidence and recommendations are constantly changing and evolving and responding to this can feel like sandbagging a beach while the tidal wave bears down on you. Some doctors become set in a certain way of doing things, even though evidence may suggest this way is no longer optimal practice. The attitude that endometriosis can be cured via hysterectomy or pregnancy is one that prevails even among specialist doctors, and even more so among those without specialist training. The goal of surgeons is often focused, cut it out and stop the bleeding. Excision, as opposed to ablation, is certainly now the gold standard for helping reduce disease and prevent it growing back and it’s the first step – but it’s not the last. Overall a more holistic approach is required, because endometriosis effects multiple systems within a body.

Has anyone really found the perfect specialist? Do they exist? There is evidence with most chronic disease, endometriosis included, that a multidisciplinary approach is more likely to convey long term success, because no one can know everything there is to know. As a member of a multidisciplinary health team I tend to value this assessment – I can’t do my job in isolation, my patient wouldn’t get the best treatment otherwise. My experience after surgery also helped me realise this. There was a point where my specialist knew he needed to provide me with other resources, and that doctor further provided me with referrals to other allied health professionals based on what was effected. I also learnt a lot on my own, because I came to realise that I had to become my own advocate, armed with facts when I fronted to an appointment. The experience of of having symptoms dismissed or normalised both prior to and after diagnosis gives rise to what is known in literature as the expert patient. This is a story I’ve heard from many women, those who researched and stood up to specialists who dismissed them or told them not to worry. Those who presented doctors with their own research and actually had that doctor listen and respond to them. I had the benefit of learning this skill and gaining confidence as I went through nursing school, because I learnt how to communicate the needs of my patients to doctors and how to advocate for a patient. This was the advice to me of women who had been through so many doctors, learn to be your own advocate and do your own research. It is an unfortunate fact that endometriosis is not well known in the public sphere, despite improvement thanks to a number of organisations dedicated to the cause, and that knowledge about the disease is not consistent among doctors. Research papers are scattered with the stories of women who have felt betrayed by the medical profession, and the feeling of happiness and relief when someone finally understands.

But all of this is hard work, and having to research, pull together your own team of professionals, attend appointments, manage symptoms and still somehow manage to have a professional and social life can be draining. Dr Kate Seear calls this “the third shift” and accounts for another facet of unpaid work by women in addition to domestic duties. We shouldn’t have to work this hard, should we? Evidence points to a need for greater education of doctors to increase both their acknowledgement of symptoms and empathy for patients’ distress, it also highlights a need to respect the patients’ knowledge and recognise them as an expert in their care. This notion is in line with the concept of patient-centred care. Patient-centred care is drilled into nurses from day one of their degree, it’s an approach to health care that is grounded in mutually beneficial partnerships between health care providers and patients – where the patient’s goals and wishes are just as important as the practitioners. This approach recognises patients as capable of being experts in their own care. In the UK, an emerging role is that of the clinical nurse specialist in endometriosis – their role is set out by the Royal College of Nursing and includes postoperative followup, utilising “women-centred outcome measures”, organising referrals to the multidisciplinary team and being available to answer questions and provide psychosocial support to women with endometriosis. The role is not currently widespread and few health services take advantage of this nurse-led model, despite a wealth of evidence that nurse-led programs for various chronic diseases are associated with better outcomes. Perhaps what women need is not the Holy Grail of specialists, but an organiser, a mediator, an understanding ear. Surely we could outsource the third shift to an expert? Having a specialist nurse help one keep track of multiple professionals and act as an advocate when one is feeling lost or dissatisfied with the care they have received. Scope exists for this role currently, most likely in private practice (as with most things they tend to start here to prove their worth before the public system invests). Fertility nurses currently provide a similar role for those undergoing treatment for infertility – the fertility nurse is your go to, they provide you with information, perform tests, organise follow up and ensure you’re seeing the right professionals. They work alongside a specialist doctor, but one gets the benefit of continuity of care, as well as an organiser – a professional patient advocate!

As knowledge of endometriosis grows among the women who have it, it is undoubtable that they will begin to demand more of a system that has historically sidelined them, fobbed them off, and left them wondering if they’re actually insane. The unpaid work and emotional burden of a chronic disease with far less attention and research funding than others is significant and cannot be ignored. These women gather and share battles and victories, about the best, the crackpots, the men and women who changed their lives in the quest for answers. These women are strong and brave because they have to be, and having been both patient and practitioner I know the medical profession can do better. Patient centred care is not a marketing campaign or a company line, it’s in the everyday interactions we have with our patients that prove to them that we put them first above all else, and that when they talk we listen. At eighteen I didn’t know how to make myself heard, or that I even needed to be heard – but I had a doctor that knew my story was important and fought for me. Every patient deserves such a person, and it is my hope that through the hard work of organisations like EndoActive, QENDO, Endometriosis Australia, and Endometriosis UK (to name a mere few) that more people will realise the need for such courage, that the men and women of medicine will fight for their patients to receive their diagnosis and treatment.

More often than not the answer to basic questions in medicine are right in front of you, you just have to know how to listen.

I am twenty-two years old today. In November it will be two years since I had surgery to diagnose my endometriosis. In that time I have learnt so much about this disease and talked to so many women who have walked the same streets and felt how I have felt, they are inspiring and a blessing. I have become a support worker with an endometriosis organisation so that someone else has a sounding board and can become empowered to be their own advocate. Twenty-two year old me doesn’t know what will happen in the future, whether her endometriosis will grow back, whether she’ll have children, whether she can handle if either of those things happen. But she is hopeful, because she has a network of inspiring endo sisters that reach the farthest corners of the world and some who regularly meet just kilometres away, as well as a trusted specialist – the guy, I bet on the right one. 

This Is How I Know It’s Real

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If you’ve never felt it, you’ll never know and never quite fully understand. For that I am glad, because I have never met anyone upon whom I would wish this pain (and I’ve met some really annoying and kind of generally abhorrent people). Despite this, I’m going to attempt to paint a picture for you, and it’s for the purpose of education. It’s for every woman who has ever had to hear the phrases: “It’s all in your head”; “It can’t be that bad”; “Suck it up”; “It’s only period pain”. It’s so that maybe you can be another person who is supportive and sympathetic to women with endometriosis, a person for whom we are eternally grateful for instead of epically resentful of.

Every time one tells a woman with endometriosis any of the above phrases, or variations that insinuate that her pain is somehow fabricated, dramatised, or not in fact there, one adds another page to the already burgeoning narrative she has been fed since adolescence. A narrative which tells her she is firstly, not to speak of such unsavoury topics such as menstruation, and secondly, that any pain is to be quietly tolerated and dealt with because it is merely a women’s lot to bear in life. It’s a (rather sexist) narrative that many of us with endometriosis have begun to re-write because we finally have the proof that everyone else was wrong. It’s not normal to have endometrium-like tissue growing all over your organs, wreaking havoc on the body around it. The same goes for women with conditions like polycystic ovarian syndrome, adenomyosis, and uterine fibroids just to name a few.

To put it crudely, endometriosis is a real bitch. It can grow back even once removed, it can cause adhesions and scarring, it can make your organs stick together, and rob you of your fertility. But you cannot see that happening inside of you, so how can you know it’s there? Though before I was referred to a specialist I didn’t think there was anything wrong with me and that my pain was normal, now everything I experienced I see in a new light and it reminds me that my endometriosis is real, it’s there. It always was.

This is how I know it’s real…

I know it because as a teenage girl I watched the other girls at school look fine and happy and energetic every day of the month and wondered if they ever even got their periods, because mine made me miserable. I would feel sapped of all my energy and pain that felt like many violent hands squeezing at my lower abdomen very tightly would suddenly sneak up on me, and yet be gone as suddenly as it had started (and would start again just as suddenly).

I know it because everything I had been told about periods said that any pain should go away if you took a Panadol or used a heat pack, and mine did not. Not ever. My abdomen was just warm as well as sore and my sensitive gag reflex was reeling from trying to swallow tablets (endo fixed that for me, you take so many pills it’s hard to have trouble anymore).

I know it when I have tried to describe the pain to people that cannot know, I use this analogy and it makes them say “ouch” and squirm uncomfortably: Ever get a calf cramp? A really bad one? The kind that comes on all of a sudden and before you know it you’re trying not to scream and desperately trying to stretch out that angry muscle? The kind that feels like the muscle is actually being torn from your body? That’s what my uterus feels like. Only I cannot stretch it out, I cannot do anything to give myself sure relief; I can only wait and hope that mercy will come soon. If I am in public I devote all my energy to not screaming, because the last thing I want is people staring at me as though I am insane.

I know it because at sixteen when I told a doctor, she put me on the Pill and told me not to worry too much because that might just make it worse, even though she seemed more concerned than I was.

I know it because two years later after the pain became worse and more frequent despite the medication (and sitting in pathophysiology class hearing about ovarian cysts and uterine fibroids while on my period made me want to throw up), that same doctor wrote me a referral to one of the best endometriosis specialists around. I found this out after looking him up the night before my appointment and being appalled because there was no freaking way anything was that wrong with me, and I would officially become a time waster at that appointment…I was not okay with that. Despite that, I went anyway because some part of me hoped that pain like this wasn’t normal and maybe he could make it go away.

I know it because when I went to see the specialist I didn’t feel like a time waster. He made me feel like I belonged in that expensive tub chair in his office because as he asked me questions all the answers suddenly seemed to point towards endometriosis in a way that I believed. I was with him for thirty minutes and by the end I had a consent form for exploratory surgery to go hunt it down where it lived.

I know it because in the year and a half it took me to actually get to having the surgery (private health is expensive y’all) I was still in pain and yet still fought with myself about whether or not I had endo, terrified most of all of not having it and having no reason for my pain. Of having surgery only to find that I had been stupid and mistaken every time I had dared to take my wonderful, kind gynaecologist at his word and believe that I could have endometriosis.

I know it because I cried on my way to theatre for the same reasons and when I woke up from surgery the first thing I asked was “did you find it?”. I was still under the affects of anaesthesia and do not remember even now to whom I addressed the question, or what the answer was. I could not even say for sure that the conversation actually happened if not for my surgeon confirming it. I cried because when I came to my senses my surgeon and the anaesthetist were gone and the shift change had happened so none of the nurses could give me an answer and instead just hugged me and gave me more pain meds.

I know it now because even after surgery I’m still struggling with controlling the pain because my game plan right now consists of throwing spaghetti at the wall to see what sticks. I’m trying everything I can and am thankful for my wonderful specialist who always makes me feel like I am lucky and well taken care of.

I know it when I tell my story and other girls tell me it sounds so much like their’s and I wish they were in front of me instead of online so I could hug them and tell them that it’s okay, because someone else knows what you know and has felt what you have felt. I understand, and you understand me, and it’s the greatest feeling I’ve ever experienced.

I know it as I type this post having swallowed two tramadol and two panadol, and the pain is still killing me, because I dared to walk around with my friend today.

I know it because endometriosis changes the way you look at the world and your life. You look for small wins and you appreciated good things that you do have. I look at my future with both hope and fear, worried that my dream of becoming a perioperative nurse will be hindered by this disease.

I know it most of all because I have seen it. The surgeon showed me the photographs from my ex-lap surgery and I could actually see the endometriosis and adhesions inside of me. Even though the relief of knowing he had found it wore off, and fear hit me like a ton of bricks, having physical proof that I was not insane is something that grounds me. I am not weak, I am not crazy, I have endometriosis and sometimes I have bad pain days; that’s okay, it’s okay to not always be okay.

Despite what this disease has taken from me, and may one day take more from me, I am in fact thankful for it…for the name, for the reason, for proof that I am not crazy. I own endometriosis, it does not own me. It’s like a game where you have to figure out the rules as you go, but when the game is over I will not walk out the loser (yes, that’s a Springsteen song). More importantly, I have found many beautiful Endo Sisters across the world who understand exactly how this feels and who remind me every day that this disease takes many forms and can take so many things, but the women who have it are the strongest, sweetest, and most powerful human beings I have ever had the pleasure of sharing with. They inspire me to hope and be better every day, no matter what my pain.

This one’s for all of you.

The Great Pretender

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It’s the name of a Grey’s Anatomy episode, albeit actually the one before where the quote I’m about to share comes from, one that I watched for the first time in the middle of my third year of university. It was during a time where my mind was waging a battle against itself, so much that finishing the last stretch of my degree seemed even harder. I remember looking at that episode title…The Great Pretender… and feeling like it was an indictment of everything happening in my head. The episode is part of a series of fantastic episodes during the show’s 11th season where Amelia Shepherd (pictured above and played by Caterina Scorsone), Derek’s little sister who is also a neurosurgeon, is attempting to remove Nicole Herman’s (Gina Davis) terminal astrocytoma. In these episodes she faces a crisis about her own abilities, having been overshadowed by Derek her whole life. This is the quote that stuck with me from those episodes:

“My whole career I have been the other Dr. Shepherd. He’s the real one, I’m the other one. Right now this plan of mine is theoretical. It’s just talk. But at some point I am going to slice into Dr. Herman’s brain. And I have this sick feeling that when I face that tumor, I will discover that I am not just the other Dr. Shepherd — I am the wrong Dr. Shepherd.”

What I was dealing with had nothing to do with brain surgery, or even my career, but that theme of feeling like a fraud or like you would eventually be proven wrong about everything you thought about yourself was palpable for me during that time. Re-watching the episode last night I thought about all the ways I still feel like the great pretender. Back then my fear was that I, like Amelia fearing that she was the wrong Dr Shepherd, was the wrong patient. Somehow my surgeon had chosen wrong and picked this girl still functioning, not in pain all the time, and still holding down two jobs and a full-time degree, to go looking for endometriosis inside of. I felt like I was wasting everyone’s time and I had thought so since the first time this kindly doctor handed me a surgical consent form. The reason I took it was because part of me wanted to believe that my pain wasn’t normal and someone could do something about it. I’ve written in previous posts about the mindset that women are taught to believe growing up, that everything that happens during menstruation is normal and ‘our lot’ and furthermore that we’re not to talk about it. I was very much in this mindset, having convinced myself of the normality of my pain and trying not to complain too much. I was in pain every month but for the days or weeks that I wasn’t I would forget how much it hurt. Pain is like that, when you’re in it you don’t remember what it’s like not to hurt and when it’s over you don’t know what you were so worried about…until it happens again. During those days and weeks I felt like a fraud.

Now that sounds rather arrogant when I look back on it, I somehow thought that I knew better than a leader in the field of endometriosis who thought that I had it. No, no, I knew better and there was no way I had it (sorry Dr T, you were right). My mind tore itself apart between this feeling of fraud one week and the pain the next week that would convince me that no, I did need surgery. I both wanted and deeply feared surgery, knowing that I needed it but was fearful of the actual business of doing it. The thing I feared even more was waking up from that surgery and finding that every moment I had been foolish enough to let myself think that I had endo would be repaid with the destruction of that identity. I spent every minute I wasn’t studying or working thinking about all of this, which actually isn’t as long as you’d imagine because I had two jobs, which cemented this identity of mine as the great pretender. What solidified it even more was that I didn’t let anyone know this was all I was thinking about, I pretended to be okay even when I wasn’t and the few times I went to try and tell someone it came out wrong or I couldn’t bring myself to. Part of me was afraid that because I had been quiet about my pain for so long, people wouldn’t believe me even when I said I had hurt for a while but just didn’t say anything. I became exceptionally good at pretending that I was one hundred percent fine.

Even now that I know I have endometriosis there is a doubt, perhaps because I doubted it for so long that I really was expecting a different outcome. I still don’t fully understand what it means to have endometriosis, for me.  I have heard many stories that share elements that are similar or identical to mine, but I have also heard many that make mine seem minor…unable to function, infertility, pain that never stops. Though at the moment my pain feels exceedingly bad, I still associate it with my IUD and not with endo…at least not yet. Sometimes it’s as though I’m waiting for someone to say it’s a mistake, it’s not really there. This is why follow up and having someone on your side to say, it’s okay now and we’ve got this, is so important with this disease. Doubt is a huge part of it. Dr Kate Seear in her paper “The Third Shift” describes how many women when they are diagnosed with endometriosis initially feel relief which later gives way to surprise, shock, or other emotional reactions. Furthermore, the information they had access to was often overwhelming with many struggling to decipher which sources were reliable and what action to take to mitigate their disease process. Uncertainty about what it means to have endo is only perpetuated through this confusion, as well as the many hours we often devote to thinking about everything associated with this disease.

I don’t know how long it will take for me to stop feeling like the great pretender, like I finally belong among my endo sisters. I only hope that it will come from fully understanding what was found during surgery and getting to the bottom of the fundamental questions anyone has about chronic disease: what does this mean? What has it done to me? What will it do?

We Get Up Again….But Then Some Jerk Cuts Our Bulk Billing

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“It’s never been a more exciting time to be an Australian” – Malcolm Turnbull.

And yet for Australia’s ageing population, cancer sufferers, and patients of chronic disease it appears it’s never been a more expensive time. The LNP in the last few days announced their budget cuts and aim has been taken at Medicare, aged care, and radiation oncology programs. Specifically the proposal for $650 million to be cut from Medicare which will mean bulk billing  incentives slashed for diagnostic imaging and pathology. This article will focus on this particular aspect because it is one that has become increasingly important in my own life as well as my fellow endo sisters that I have connected with over the past few weeks. These kind of cuts are a blow to people with chronic illnesses including cancer. It seems that after enduring so much the government, a body with a duty to protect and care for its citizens, will be making it harder for us to live an already complicated life.

If you know anything about endometriosis, the second that diagnosis is delivered you know that you’ll be seeing the office you’re sitting in a lot. I remember thinking: I like these chairs, they’re comfy, that’s good because I’ll probably be back here again. I also remember the MRI my doctor sent me off for next, and the close to $350 pathology invoice I received a few days later. At the bottom of said invoice was the amount I would get back from Medicare, not all of it, but enough to make the amount I had to pay less significant. I got money back from Medicare on my surgeon and anaesthetist’s fees too which wasn’t a lot when compared with the total cost of the surgery, but it was helpful especially since I had no private health insurance. The thing about endometriosis is that not just any gynaecologist can pick up a scalpel and know what to do when they find it, or do what needs to be done without damaging the organs implicated. If you manage to find one of them in the public system it’s likely you’ll be waiting a while because the state of public health in this country is not something to be proud of. State governments like the Labor one in Queensland have been trying to fix that with initiatives like legislated nurse-patient ratios and policies to help clear surgical waiting lists. But many endo or “might be endo” girls have no choice but to go to private for the expertise or because they simply cannot wait. If they’re lucky they have private insurance, but not all of us do. So those little cash backs we get from Medicare are important. A lot of sufferers have tread a long road to get to the exploratory laparoscopy that will give them their diagnosis, a psychologically and financially draining road at that. When you finally get it your journey has just begun. The surgeon may have excised it, but endo can grow back and depending on the severity you could be in for a lot of time sitting in your specialist’s office. A part of making sure no one gets scalpel happy too soon is diagnostics and pathology. No Medicare benefits will only add more costs to our financial burden.

This comes after news earlier this year that certain over the counter medications may be set to become prescription only in an attempt to curb community addiction. The medications are the kind that endometriosis patients need just to get out of bed some days, not because they are addicted but because they are in pain. We already spend a good deal of our lives in doctor’s offices, adding more just to get pain medication seemed a dire prospect for many of us. We get knocked down so often by this disease, and despite getting up and trying to keep going things like this keep us falling. Being newly diagnosed I haven’t had to deal with as much yet, but the stories of my endo sisters are enough to make me expect the worst but hope for the best.

Now let’s talk about a more deadly consequence of these cuts. Patients who depend on diagnostics and pathology even more than endometriosis sufferers are cancer patients. In their case timely and accurate use of these services may literally be the difference between life and death. Delays in diagnosis cause delays in treatment and ultimately can mean progression to later stages of the disease which are harder or impossible to treat. If one truely wanted to save money and resources, one would realise that the cost of cancer treatment in the later stages which requires more staff, more medications, more resources, costs the public health system more. Therefore early detection, diagnosis and treatment would have economic benefits, not to mention lives saved. Once again the most vulnerable in society are footing the bill in the latest round of cuts.

It appears that no lessons have been learned from a leadership spill and fierce opposition to the last round of damaging cuts to health, education, and childcare. While Turnbull’s approval rating climbs, his policies reek of the same Abbott stench. These are not policies that are sustainable for people with chronic illness and isn’t it time someone who wasn’t vulnerable helped to “clean up the budget mess”? It’s time to stop playing the Labor blame game because more than two years in it’s your responsibility now and the situation has only gotten worse. We’ve suffered enough and so direct your poorly aimed wrecking ball somewhere else.

Well, it seems like I’ve been playing your game way too long
And it seems the game I’ve played has made you strong
But when the game is over I won’t walk out the loser
And I know that I’ll walk out of here again
And I know someday I’ll walk out of here again

– Trapped, Bruce Springsteen